Had an spot with NL, he downplays chiari so much. Always tell me its migrains, and the discovery of my chiari was a fluke. That had I never known it was there it wouldn’t be a issue!!!
Real treat, my options are limited! Until recently, insurance accepts WI Chiari center! !! Waiting for the appt call!!!
Today the NL actually said “I think something may be wrong with you”. My left hand is weak and he was concerned about the feelings of water in my ears.
Told him the neck pain is daily and I’m learning to live with it.
So now he wants a mri. Of the neck only!!! Omg! Yeah right, not happening! Chiari center can do all that…correctly! !!
So Dr not concerned with neck, shoulder and head pain BUT full ears and a weak arm!! Where is he going with this!
With all that he said I could keep running and I could all the things I wanted, no limitions from chiari! Not sure I should trust him…
The American syringomelia and chiari alliance has some good information I was sent a few weeks ago. It says right in there that people with CM even after surgery may have to limit their physical activities due to their symptoms. Its seems most NL's just tell you whatever and pass you off like we are making up our CM symptoms. I had the worst migraine/neck pain for 7 days and ended up in the ER, they loaded me up with pain killers and sent me home. All that did was make me feel worse! But after the pain did subside I felt like I had a stroke, my left side of my face was numb and droopy and so was my left arm, I had almost no strength to even lift my arm up. I was told not to worry by my NL. I'm pretty sure that we should all worry when we are having horrible pain and muscle weakness.
I hope that you hear about an appt. soon! That is great that your insurance will cover it. Sounds like you need someone to actually hear what you are saying. Post op has been a struggle for me also. I can't even get my NS (who did my surgery) to look at an MRI that SHE ordered more than a month ago. Needless to say, I am so done with her! I have since seen a new NS and he agrees that I should have been sent for a CINE MRI and another LP to measure the rate of the CSF flow, so he ordered them. It makes me so stinking mad that I have to go through yet another MRI (which I hate!!!). I asked her to order the CINE in the first place but she said it wouldn't be helpful. Anyway, my point is....We all (unfortunately) have to doctor shop. It's not fair, it's not right, but eventually we will all find someone to listen. Please keep us updated and let us know when you appt is scheduled for. Best of luck!
I just wanted to chime in on the arm/hand weakness. I have also been diagnosed with carpal tunnel in both hands/wrist. My PCP sent me for PT for it and on my first visit she measured my crasp and my right was 32 and my left was 31. She said at my age (29) it should be significantly higher. After 9 weeks of PT, she measured it again and my right has gone up to 34, but my left has went down to 29. She said she doesn't understand why my left is going down when we are doing the same treatment on both. But in the same time, I have noticed that my whole left arm has gotten worse. The numbness and tingling is more often in my left. And it has spread up to the middle of the top part of my arm, but is still only up to my elbow on my left. This is also the reason why my NS is sending me for a LP, EMG and Nerve conduction study.
I hope you are able to find a doctor who knows what they are doing and get some answers real soon. Good luck.
Another thing... I was told that my life long battle with constant ear and sinus infections was caused by the Chiari blocking the CSF from going where it needed to and it finding an alternate path into my ears and sinus cavities.... If you hold your head over and can get the fluid to drain out onto a paper towel or something white like that, and there is a yellowish halo on it, then it is CSF.
Hi Jen. My name is Mikey. I'll tell you this and you can hopefully find it useful. My problems started with "migranes". I had basically ignored the ringing in my ears and my leg going numb and my vision being blurry from time to time. I spent the last three years letting my neurologist and NS tell me that i needed to take all kinds of medicine and surgery would probably do more harm than good. Got tired of takeing 5 pills a day and found a new NS. He told me more in the first five minutes of discussion than they did in three years. He insisted on doing another MRI of my brain AND neck and also a Sine flow MRI. I am now scheduled for surgery this December and looking forward to improving my life. Ohh and i am off ALL the medication. Hope this helped and good luck, Mikey.
Thanks you guys! I'll keep you posted! The Dr shopping journey is just as exhausting the chiari itself! I left a message at WI Chiari center today to confirm they received my films. And also to confirm that I should just hold off on MRI's until I go there.
I really do not want to do it here as NL wants and then have to just do it all over again.
I just want to chime in and maybe at least confirm you're not "crazy" like so many doctors make us feel...but I also was very weak on my left side (before decompression) - especially after I had a car accident during the time I was dr-shopping for someone to help me with my chiari, but even before that the 1st surgeon I saw said he expected me to become weak or even experience paralyzation on my left side (and then after that he said he would treat my chiari - yeah right, i left and found another surgeon!), I don't know much about chiari affecting one side or the other of your body, but it seemed like my chiari affected my left side more and when I was in physical therapy after my car accident for my left shoulder they did grip-tests and even for my left hand being my non-dominate hand they said it was considerably weaker.